Things have been going better than last month.
Gemma has been doing well and we were able to get her down to minimal ventilation settings and did better than expected so we trialed an extubation but unfortunately she failed.
Gemma is able to initiate all of the breaths but she is very pressure dependant so we have her on 'pressure support' and have a new plan to wean her rate. The doctors don't know if she will ever be able to breath on her own but I am pushing them to make every effort to see what she will be able to do before making any decisions.
Things can be extremely frustrating at times when you don't feel like you have a say over your own child. I feel that this next wean is pushing her too quick but only Gemma will be able to tell us what she is ready for.
Charlie and I went in for our EMG test today to see if we had any underlying muscular/nerve conditions to help figure out Gemma's condition but everything was 'normal'.
We are waiting on her DNA results from Germany to see if they can figure out which genes are affected, which might give us possible direction towards her diagnosis. Gemma's condition remains undiagnosed and we may never find out what she. Genetics think she has a rare/dormant/hereditary disorder where an abnormal chromosome on each of our sides was passed down through generations until we (two people that were carriers) came together to produce a baby that (out of 1 in 4) could get it.
Gemma has been doing quite well, she has no IV lines, no medications (except for her suspected reflux), she is moving more, having long active and alert periods, and having more range of motion in her legs.
Thank you for your thoughts,
Love Amanda, Charlie & Gemma
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